Gender inequality’s latest victim: Women and girls with autism

School children march for autism awareness in Jacksonville, Florida. (Lance Cpl. Andrea Ovalle)

Girls and women are being underdiagnosed with autism, which takes a significant toll on their mental health and wellbeing, according to a leading neuroscientist in the United Kingdom.

“We’ve overlooked autism in women and girls and I think there’s a real gender equality issue here,” Professor Francesca Happé, director of the Social, Genetic & Developmental Psychiatry Centre at King’s College London, told The Guardian. “I think we are missing large numbers and misdiagnosing them too.”

Autism spectrum disorder (ASD) is a medical condition that affects how people socialize and communicate with others. Until recently, ASD was thought to primarily affect boys and men. Medical providers believed that for every ten men diagnosed with the condition, only one woman was similarly affected, according to The Guardian. Today, ASD “is about four times more common among boys than girls,” according to estimates from the Centers for Diseases Control and Prevention, but even that data may underestimate the extent to which the condition shapes women’s lives, according to Happé and other researchers.

There are several reasons women and girls have been underdiagnosed with ASD. Previous studies of the condition sometimes recruited male-only cohorts. “This means that what we think we know about autism from research is actually just what we know about male autism,” Happé told The Guardian. She recently received a grant of 500,000 pounds to investigate gender differences in autism spectrum disorders.

ASD may also manifest differently in men than in women. According to one 2013 study, women with autism have more cognitive problems and more difficulty fostering relationships and engaging in daily self-care (what’s referred to as “adaptive behavior”), even as they are less likely to become hyper-focused on one subject or activity. When women do become hyper-focused, their interest may be perceived as more mainstream — for example, they may become fixated on “horses or boybands” rather than “electricity pylons,” according to The Guardian.

Meanwhile, research published in 2017 in the peer-reviewed journal Autism indicated that women and girls are better at “camouflaging” their communication difficulties, by exercising normative social behavior such as “making eye contact during conversation” and “using learned phrases or pre-prepared jokes in conversation.” Better camouflaging means women and girls may go undiagnosed for longer, to the detriment of their health. A study published in March 2017 found that 23 percent of women hospitalized for anorexia met the diagnostic criteria for ASD, but had never previously been assessed or treated for the disorder.

In March, several women who had been diagnosed with autism later in life described to the BBC how difficult it was for them to get the help they needed, and how they were finally able to understand themselves once they were assessed for ASD.

“As a child I'd felt as though everyone but me had been given a manual on how to behave around other people,” said Maura Campbell, one of the women. “When my autism was identified, it felt like taking off a corset I didn’t know I’d been wearing.”

Another woman described her diagnosis as a “relief,” adding that it helped her “realize loads of women and girls have gone through — are still going through — exactly the same thing as me.”